Scleroderma

Question: If anybody is associated with the Scleroderma Foundation or Federation, do you know if there is funding? In other words, if a scleroderma patient has no insurance, do you know if there is funding available that would help that scleroderma patient?

Answer: Do a little more web research and contact those who're available via internet. God bless.

Question: My mom has scleroderma; what is the best way to comfort her from afar? My mom was diagnosed with scleroderma 6 or so years ago. Lately, she says it has been getting worse, affecting her esophagus and she needs to get it stretched. I'm her only family, and I live over 5000 miles away. She has a few friends, but no one to insist they go to the hospital with her etc. It's breaking my heart...what else can I do besides call her and give her my love and support?

Answer: I don't understand what her condition is, but i'll try to help in the best way I can. "Life is too short so take the time and appreciate". -Lyrics by Nicholas Jonas. Appreciate the fact that your mother is alive. You have an oppertunity to visit her, so why dont you? She is your MOTHER. Come on - you LIVED inside of her for 9 whole months and she brought you into this world. The least thing you could do is to pay her a visit? Dont take your mum for granted. Xx

Question: I have scleroderma, and would like to know how to rid the swelling in my hands and feet? I only have this severe swelling in my hands at night and or when I drink. I have to sleep with the house really cold in order for the swelling to stay at a minimum. When I drink, my hands get really swollen and hot. During the day I don't have much of any symptoms. A real drag to not be able to wear ring, as I can't wear my wedding rings, and I am a ring-o-holic.

Answer: Hi Dana, I have a similar problem and swell up so bad at night that I sometimes cannot close my hands and my legs & thighs get bad too. I use pantyhose right now for my legs and it helps a lot and I do ankle pumps (move my foot up and down) - this helps push the edema out of the area. Any form of muscle movement/contraction will help push fluid out of the area. I also do Manual Lymphatic Drainage to remove fluid from the area. This is a link to a video. I have the DVD and it is helpful: http://www.realbodywork.com/lymph/lymph.htm Compression garments work better than pantyhose. You can wear them at night while you are sleeping or at any time. They make compression socks and gloves that decrease edema: This site looks great but I have not ordered from them yet. You might want to bookmark it. SOCKS: http://www.lymphedemaproducts.com/products/socks.html GLOVES: http://www.lymphedemaproducts.com/products/gloves.html I have not received a diagnosis yet - and wish I could find out why I am swelling so much. It really only happens at night and in the shower. Ask you doctor if it is okay to use compression garments to help. I really don't think they are contraindicated for scleroderma. But MLD may be - I am not sure.

Question: With the proper treatment, can you live through scleroderma? I have heard of people dying of scleroderma and i was wondering if i ever get it, will i be able to survive with proper treatment?

Answer: Ms. Jollie: Yes, should you develop this disease, you will may survive with proper treatment. There are several forms of Scleroderma, some more aggressive than others. My second wife died of Scleroderma in 1986 and I received my diagnosis last fall. I go to the Medical University of South Carolina for treatment, have an excellend rheumatologist and primary care physician, undergo acupuncture and practice meditation. There has been significant progress in the medications available in even the last 5 years, according to my physician in South Carolina. I believe the key to living with this disease is to be optimistic and to be happy. I may be sick, but I don't haven to suffer or live in fear.

Question: how can you stop the itchiness from a disease called scleroderma? my uncle has a rare disease called scleroderma which causes tightening of the skin and severe itchiness.he has tried every thing we can think of and nothing works.can someone please help

Answer: Thats an awful disease, I really feel for you guys. I've looked after some people with that and I wouldnt wish it on anyone. I personally dont know of anything but I found a site. If you contact them they may have some ideas since it's what they are there for. http://www.scleroderma.org/

Question: What is new lately that's helpful in bad cases of scleroderma? Any helpful info. re diet with it? What medicines are being used?

Answer: My great aunt suffered from scleroderma. What a terrible disease. Her doctor told her she was the longest living case he knew about. She lived over 35 years with it. She never, NEVER, let it get her down. You could tell she hurt and she felt bad, but she climbed the stairs with laundry and cooked at least two meals a day. She never had anyone take care of her. She got bad the last couple years because she was so thin, from her stomach being so terrible. She had no meat over her tailbone. It looked almost like a tail, it stuck out so bad. She developed a bad bed sore, and even after a couple surgerys and wearing a machine to keep it drained, it never healed. She was a true fighter tho. The most amazing person I will ever know. She never complained, she went to womens catholic mass EVERY morning of the year, and was thankful for being alive. She was the kind of person who lived to help others, she donated her body to science, because she wanted to help be a part of why a cure was found for this disease. And her doctor thought she would be perfect because she lived so long with it. Unfortionally, her daughter went aginst her wishes and had her creamated. I can understand I would have a hard time knowing my Mom was being cut up and tested. But I really do believe that is what she wanted to do, and she should have went with her wishes.

Question: What am I missing for Social Security Disability? I have Scleroderma and Fibromyalgia.? I am in a lot of pain all the time. They denied my case and said they didn't have any evidence of the severity. Are there any Social Security workers or SSA attorneys out there? Or anyone have the same problem?

Answer: I am currently going through the process of disability , the biggest thing you need is doctors reports ..Just saying you have pain is not enough ..All the doctors I have seen agree I am disabled ..Including the doctors social security sent me , also agree I am disabled ..Yet I have been denied twice .. Get doctors to see you ad those records , and keep appealing ..Always file every appeal ..And you will win ..

Question: can anybody suggest medicine for body aches due to scleroderma? my mom is 55 , is a scleroderma patient for the past 8 years , she takes both allopathy and herbal supplements , of late she is suffering too much with right hand pain ....she cannot lift and comb her hair and do anything above the shoulder ......she has calcinosis around her shoulder joints and elbow joints .....can anybody suggest a medicine for a little free movement ......she stays in India for 6 months and in US for 6 months . at present she is in US .

Answer: Has your mother heard of ap treatment? its the idea that you can treat diseases such as arthritis and scleroderma with antibiotics. this treatment does work and know off of first hand experience. i have scleroderma as well and know this may help her. here are a few websites and books to read... all the best. http://roadback.org/ http://rheumatic.org/ http://search.barnesandnoble.com/Scleroderma/Henry-Scammell/e/9781590770238/?itm=3 http://search.barnesandnoble.com/The-New-Arthritis-Breakthrough/Henry-Scammell/e/9780871318435/?itm=1

Question: Scleroderma, anyone out there had a family member die from it? My Mom passed away in 2003 after 13 years with it.

Answer: I didn't have a family member die from it, but a very good friend. It is a horrible disease that my friend had for about the same time your mom did - 13 years. She died last summer from complications of the scleroderma along with having to fight breast cancer. Sorry that you lost your mom.

Question: I would like to know any and all information about Scleroderma.? I am trying to find out anything that I can to help a friend with what we think is a form of Scleroderma. Does anyone have any answers??? Please help if you can!!!!!!! Any little bit of advise, treatment ideas anything like that would be most appreciated.

Answer: Scleroderma is a autoimmune disease. The word means thickening of the skin (unfortunately organs like the lungs,kidneys,& heart can also be affected). There are 2 forms of scleroderma - Limited & Diffuse. The limited form only affects the skin & the diffuse form affects the skin and the organs. It can affect SO much more though like extreme fatigue, digital ulcers,calcionosis, swelling, extreme pain and the list goes on and on. I have the diffuse form and I have found a very good website that I go to frequently. It's scleroderma.org You need to check it out. It also has weekly e-newsletters to keep up to date on the latest treatments and everything. I would recommend your friend going to a rheumatologist and being tested! Best of luck to you & your friend Joy

Question: Scleroderma..? My husband has Diffuse Scleroderma. I am looking for ways to help ease his pain. I know massage helps a lot, along with soft stretching. Is there anything else that I could do to try to help eleviate some of the discomfort? This is some nasty stuff. Sure wish they'd find a cure........ Thanks for your help!

Answer: I posted on your last question and didn't realize you were looking for ways to help his pain. I am sorry that I didn't offer any ideas before. If his hands are affected and really stiff and the skin is super tight what worked for my mother in law, was hot (warm) waxes and lotions. Kind of like when you get a manicure and they soak your fingers except do the whole hand or foot. She found an old tub that was for soaking your feet and she would put lotion and wax in it and heat it up so that it is warm and then soak in it. This really seemed to relieve pain for her. However, she was on a lot of pain medication because there isn't a lot out there to help people specifically with this disease. She also said laying in the sun helped ease her pain. It is even more rare for men to have it.

Question: Have you ever success in antioxidant treatment for scleroderma? Last two years, my mother got scleroderma disease and I found that antioxidant therapy could help her get well. I need to share this experience and share the information. Please joy http://antioxidant-scleroderma.blogspot.com

Answer: I'm not surprised. I have seen natural cures for auto immune for 10 years now, besides myself who had one since a child and have cured myself over 10 years ago. Thanks for this. Also, e mail me for information on how antioxidants work and why they work and how the National Cancer Institute and John's Hopkins medical center advocates and is studying antioxidants from whole raw fruits and vegetables. Disease is connected to nutrition. The body is a garden and when there is balance, there is no room for disease. Here's a news flash... We are not drug deficient.

Question: Will the scleroderma morphia on my stomach stretch to allow full term pregnancy? I have had the spot on my stomach sice age 12, and it hasn't grown any on that side of my belly button since then. now i'm trying to get pregnant and can't. i have miscarried 3 times, could the morphia be to blame?

Answer: no, but you should consult your doctor or be referred to a specialist if you cant get pregnant. SM usually stretches a bit but not much, though it wont cause any anomilies in a pregnancy. the skin around your tummy was made to stretch. dont worry about it, stress is a big factor with hormones, chill out a bit and get your body relaxed and eat as healthfully as possible. good luck to your new baby trials!

Question: Anyone know anything about the disease Scleroderma? My mother is 44 years old and was diagnosed with a disease called Scleroderma about 2 years ago. It is a horrible thing and she turned hard from her fingertips to her elbows and her legs also turned hard. She is now going to Duke University for Chemotherapy and I was just wondering if anyone else knows someone with it.

Answer: Systemic sclerosis is commonly called "scleroderma" because the most obvious symptom is "hard skin." Being a systemic disease, however, it's more than skin deep. The fibrosis, or scarring, it causes can occur anywhere there's connective tissue in the body, and that's almost everywhere. Add to that the malfunction in and damage to blood vessels it can cause, and it seems like a sure recipe for disaster. Even though most systemic scleroderma patients will not die from complications of their disease, most of us struggle to live with the affects. Profound fatigue is quite common, and you can imagine how that impacts someone's life. We frequently have the joint and muscle pain of secondary fibromyalgia, and almost all have some gastrointestinal involvement - at the very least, GI reflux. Raynaud's phenomenon is constant in about 97% of us - cold and stress cause blood vessels to spasm shut, cutting blood flow to hands, feet, nose, ears, and tongue. And these are the "minor" symptoms. When it gets dangerous, scleroderma can cause fibrosis in the lungs and heart, further into the GI tract where it can cause malabsorption of nutrients, in the kidneys and it can affect the pulmonary artery. Treatment is getting better - kidney complications used to be the number one killer in scleroderma and are now very treatable with ACE inhibitors. But not all treatments work for everyone, and some just have limited usefulness. The best help you can be for your mom is to be there, whether it's going to appointments with her, cleaning house, making dinner, or just to listen when she needs to talk about her pain and fears. Scleroderma becomes like a predator to us patients, lying in wait for the time it can strike in another area or in another way. Again, though it doesn't happen to most of us, we live knowing that it can kill us. It's not an easy way to live - help your mom concentrate on positive things and to ride the ups and downs by looking forward with hope. You can find extensive information about all the forms of scleroderma at the Scleroderma Foundation website - http://www.scleroderma.org. I'd also recommend calling them at 1-800-722-HOPE for their free booklet, "Understanding and Managing Scleroderma," written in part by Dr Maureen Mayes, author of "The Scleroderma Book," another good source of info. The Scleroderma Foundation has numerous live support groups in the US where you and your mom could meet and talk to other patients and families about coping. They also directly or through their chapters sponsor local and regional educational meetings to not only benefit patients, but to spread information to health care providers on the latest research and treatments. Also, the SF funds over $1 million each year in peer-reviewed scleroderma research. Your mom may also be interested in one of the many places to get support online. Search "scleroderma" on Yahoo and you'll find tons. Just remember to take care online, as with any other "unofficial" contact.

Question: How serious is scleroderma? My fiance's mother just got diagnosed with scleroderma and we just wanted to know how long can people live with this? And what treatments did they receive?

Answer: Scleroderma has no known cure — there's no treatment to stop the overproduction of collagen. Your doctor may recommend a number of medications to make it easier for you to live with scleroderma by treating its symptoms. Your doctor may also suggest medications to prevent complications of scleroderma that may affect various organs. Here are some of the many treatments prescribed for the symptoms and complications of this condition... read more: http://www.mayoclinic.com/health/sclerod…

Question: Is it possible to have a positive ANA test with Anti-centromere antibodies and not have CREST scleroderma?

Answer: That is a very technical question and should be asked of a trained physician and not a bunch of YAHOOS